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A wheat-free diet seems to be gaining popularity in IBS circles, and people specifically differentiate it from gluten-free. Many tried GF and say they only needed to be wheat-free. Can that be? Is there something in wheat besides the gluten that people react to? Or is the gluten in barley and rye different, in that you might not react to it, but you will react to wheat gluten? This doesn't compute for me. But I do have symptomatic friends and family who might consider a wheat-free diet if they don't have to go all-out and do GF. Can there be a benefit to only cutting out wheat?
Here are a number of testimonies from IBS sufferers about their experience going only wheat-free.
http://www.irritable-bowel-syndrome.ws/ ... e-diet.htm
Wheat free versus gluten free diets
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Z,
I don't get why someone who is symptomatic would consider eliminating the cause of their symptoms only if it's one thing, and not another. Clearly the only way to know would be to go wheat free... and if that didn't help, then (surprise!) it's the gluten, not just the wheat.
The question is, do they want to be well, or do they want to not-have-to-be-GF? I'm not saying they have to choose one - not everyone does. But IF THEY DO HAVE TO CHOOSE...
Let's review: there is no such thing as IBS. So anyone who has that has something else that they or their practitioners are unwilling or unable to name. Probably some are assured by their docs that diet has nothing to do with it. So... if you're going to complicate your life by dropping wheat, why not maximize your odds of feeling better? Isn't feeling better the goal? I wanted to feel better long before I also wanted to prevent future health problems. I had to feel better in order to start looking ahead to the future.
Wheat has a higher percentage of gluten than some of the other gluten-containing grains. But, as we know, it doesn't take much gluten to sicken those of us who can't tolerate it.
I realize I'm just like a wind-up toy on this sort of topic - the really nasty catch here is that "gluten lite" is a completely useless approach. It doesn't solve the underlying problem, and it doesn't give you the diagnostic info about whether eliminating gluten solves the problem. Because if it does, then gluten *was* the problem.
If someone has a true wheat allergy, that might be another story (but then they would be on a food allergy board, not one for the imaginary beast "IBS." And I would bet you just about anything you care to name that folks with a true wheat allergy would be better served avoiding rye/barley as well, if only because of the risk of cross-contamination - but also because of the molecular similarities.
BTW, some of those comments praising the wheat-free diet sound as though the person's actually GF - just to further compound the issue.
I can't imagine eating *any* grains on a regular basis while symptomatic. I like getting out of the house and living a normal life a lot better than I ever liked cereal grains. And I would suspect serious addiction, in anyone who actually prefers grains to feeling good and living well.
I inadvertently had a teensy amount of barley malt in a teensy amount of a liquid B-vitamin a few weeks back (careless label reading). That must have been a very small amount of gluten, and it made me spectacularly sick the next day - fortunately, pretty briefly. That might not be the case a year from now, but I don't plan on trying it again. What is the goal - to get more grains in the diet, or to heal and feel great and eliminate the *known* causes of autoimmune diseases of virtually every body system? For me - it ain't about the grains.
I know the GF thing has a lot of people skeptical or spooked or confused or baffled, but it really is not that hard. In fact, it's infinitely easier if you just slam the door on 'products' of almost every type, instead of trying to relive the bakery experience with flours that aren't so good at that job. For those who can tolerate few if any vegetables and fruits, finding workable calorie sources is important (and of course, the least likely to be successful would be barley, rye, and probably oats).
I'm sorry, Z, I know this is more rant than help. The idea of going to the trouble to eliminate wheat, and *not* eliminate gluten (which is what I did with that B-vitamin), seems to me not to be sufficiently easier, to justify the likelihood of failure (failure to improve, failure to figure out why).
I don't get why someone who is symptomatic would consider eliminating the cause of their symptoms only if it's one thing, and not another. Clearly the only way to know would be to go wheat free... and if that didn't help, then (surprise!) it's the gluten, not just the wheat.
The question is, do they want to be well, or do they want to not-have-to-be-GF? I'm not saying they have to choose one - not everyone does. But IF THEY DO HAVE TO CHOOSE...
Let's review: there is no such thing as IBS. So anyone who has that has something else that they or their practitioners are unwilling or unable to name. Probably some are assured by their docs that diet has nothing to do with it. So... if you're going to complicate your life by dropping wheat, why not maximize your odds of feeling better? Isn't feeling better the goal? I wanted to feel better long before I also wanted to prevent future health problems. I had to feel better in order to start looking ahead to the future.
Wheat has a higher percentage of gluten than some of the other gluten-containing grains. But, as we know, it doesn't take much gluten to sicken those of us who can't tolerate it.
I realize I'm just like a wind-up toy on this sort of topic - the really nasty catch here is that "gluten lite" is a completely useless approach. It doesn't solve the underlying problem, and it doesn't give you the diagnostic info about whether eliminating gluten solves the problem. Because if it does, then gluten *was* the problem.
If someone has a true wheat allergy, that might be another story (but then they would be on a food allergy board, not one for the imaginary beast "IBS." And I would bet you just about anything you care to name that folks with a true wheat allergy would be better served avoiding rye/barley as well, if only because of the risk of cross-contamination - but also because of the molecular similarities.
BTW, some of those comments praising the wheat-free diet sound as though the person's actually GF - just to further compound the issue.
I can't imagine eating *any* grains on a regular basis while symptomatic. I like getting out of the house and living a normal life a lot better than I ever liked cereal grains. And I would suspect serious addiction, in anyone who actually prefers grains to feeling good and living well.
I inadvertently had a teensy amount of barley malt in a teensy amount of a liquid B-vitamin a few weeks back (careless label reading). That must have been a very small amount of gluten, and it made me spectacularly sick the next day - fortunately, pretty briefly. That might not be the case a year from now, but I don't plan on trying it again. What is the goal - to get more grains in the diet, or to heal and feel great and eliminate the *known* causes of autoimmune diseases of virtually every body system? For me - it ain't about the grains.
I know the GF thing has a lot of people skeptical or spooked or confused or baffled, but it really is not that hard. In fact, it's infinitely easier if you just slam the door on 'products' of almost every type, instead of trying to relive the bakery experience with flours that aren't so good at that job. For those who can tolerate few if any vegetables and fruits, finding workable calorie sources is important (and of course, the least likely to be successful would be barley, rye, and probably oats).
I'm sorry, Z, I know this is more rant than help. The idea of going to the trouble to eliminate wheat, and *not* eliminate gluten (which is what I did with that B-vitamin), seems to me not to be sufficiently easier, to justify the likelihood of failure (failure to improve, failure to figure out why).
Sure, for someone who is only sensitive to wheat. There are a lot of differences in genetics. There are a lot of different peptides within the various gliadin and glutenin amino acid chains to which people react, (with varying degrees of sensitivity/severity), in fact, almost a hundred have already been cataloged, and surely there are more that remain undiscovered. Those individuals with the HLA-DQ2.5 profile are sensitive to many more peptides than those who have an HLA-DQ2.2 configuration, for example. Some individuals show a significant response only to the alpha gliadin peptide in wheat, and everything else is minor, for example.Zizzle wrote:Can there be a benefit to only cutting out wheat?
Technically, barley and rye don't contain gluten. They contain hordein, and secalin, respectively, which posses a much lower level of reactivity than the gluten in wheat. Some people may not notice a reaction to them, because of the dose effect - they're simply not as potent as wheat gluten. Sara is quite correct, it may simply take more of it, to cause a reaction, in some people.
Frankly, I don't see what all the hullaballoo is about - the only real difference is barley, in the form of malt. How often does anyone eat rye, these days? I don't recall ever eating it. The only barley that I've ever eaten was in the form of barley malt. So what's the big deal? There are a fair number of foods with barley malt, (mostly breakfast cereals), but other than that, barley malt is not exactly ubiquitous. How much nutrition could anyone miss, by avoiding it?
It boils down to the question of whether one is willing to eat a little bit of poison, in order to gain a little bit of variety in one's diet. What's so great about barley and rye.
I've never missed them.Remember, anyone who raises that question, is still in the denial stage. (I'm not referring to you, Zizzle - I'm talking about those IBS'ers, or whoever is trying to rationalize eating rye and/or barley, while avoiding wheat).
Tex
P. S. Sara,
You have to remember that most people who have been diagnosed with "IBS", don't realize that it doesn't exist - they trust their doctor.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sara,
What I'm trying to understand is why these people get total improvement in their symptoms when only going wheat-free, and presumably getting small amounts of gluten from other sources. Is there something about wheat gluten, or something else in the wheat, that some people may not tolerate, while being tolerant of rye or barley gluten? Or can reduced gluten actually be enough for some people to feel 100% better?
Tex,
Barley is ubiquitous in BEER. I know many people who will not entertain the idea of a GF diet, simply because it would mean giving up their precious beer.
What I'm trying to understand is why these people get total improvement in their symptoms when only going wheat-free, and presumably getting small amounts of gluten from other sources. Is there something about wheat gluten, or something else in the wheat, that some people may not tolerate, while being tolerant of rye or barley gluten? Or can reduced gluten actually be enough for some people to feel 100% better?
Tex,
Barley is ubiquitous in BEER. I know many people who will not entertain the idea of a GF diet, simply because it would mean giving up their precious beer.
Zizzle,
Go back and reread my post - as usual, I was still editing it when you responded.
Beer is by far the biggest deal-breaker related to the GF diet. You would be amazed at how many people will ignore symptoms, (and presumably lie about them, to coverup), just to rationalize not giving up their precious beer. Besides it has a double set of addictive attributes - hordein, and alcohol, so naturally they are going to fight tooth and nail, before giving it up, and they will claim whatever is necessary to rationalize their "addiction". Of course, I'm just guessing that hordein has a "hordeomorphin" attribute, but since that characteristic has been verified for gliadin and casein, I'll bet that it's true of hordein, as well.
Tex
Go back and reread my post - as usual, I was still editing it when you responded.
Beer is by far the biggest deal-breaker related to the GF diet. You would be amazed at how many people will ignore symptoms, (and presumably lie about them, to coverup), just to rationalize not giving up their precious beer. Besides it has a double set of addictive attributes - hordein, and alcohol, so naturally they are going to fight tooth and nail, before giving it up, and they will claim whatever is necessary to rationalize their "addiction". Of course, I'm just guessing that hordein has a "hordeomorphin" attribute, but since that characteristic has been verified for gliadin and casein, I'll bet that it's true of hordein, as well.Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Zizzle,
Some folks may indeed be wheat-sensitive; and others have actually gone GF, according to what they describe in those comments. That makes it hard to sort out how much of a difference folks get from dropping wheat, and know who's likely to be "wheat-only" sensitive (though, with our common genetics, we can be pretty sure that we are not those folks!).
A friend who owns a restaurant says they sell a LOT of GF beer these days, and it's good. No idea what's in it, or which brand - I stopped liking beer, when it stopped liking me. I guess that would be a tough sell, though to someone who's committed to a particular IPA or lager or - whatever.
I am considering ordering a cheek swab for my husband from Enterolab. He reports feeling much better with less/rare gluten. Now that I'm convinced that "not having horrible symptoms" is the tip of the iceberg of this problem, I'm wondering whether he might like to know his 'gluten genetics,' so he can join me across the gluten divide, should any symptoms befall him. Now that I'm not distracted by my "IBS"-like symptoms, I am hoping I can keep various other body systems from further decline... mine, and his as well. I have to suppose that if "rare/less" is making a difference, that means that "some" is having an effect in him, probably in ways we're not even seeing.
Tex, I thought those components of rye/barley were themselves 'glutens' - not the same as the gliadin gluten in wheat, but more similar than the zeanin/oryzin glutens. Kind of a fine point, but maybe it will help Zizzle in this quest, somehow.
Love,
Sara
Some folks may indeed be wheat-sensitive; and others have actually gone GF, according to what they describe in those comments. That makes it hard to sort out how much of a difference folks get from dropping wheat, and know who's likely to be "wheat-only" sensitive (though, with our common genetics, we can be pretty sure that we are not those folks!).
A friend who owns a restaurant says they sell a LOT of GF beer these days, and it's good. No idea what's in it, or which brand - I stopped liking beer, when it stopped liking me. I guess that would be a tough sell, though to someone who's committed to a particular IPA or lager or - whatever.
I am considering ordering a cheek swab for my husband from Enterolab. He reports feeling much better with less/rare gluten. Now that I'm convinced that "not having horrible symptoms" is the tip of the iceberg of this problem, I'm wondering whether he might like to know his 'gluten genetics,' so he can join me across the gluten divide, should any symptoms befall him. Now that I'm not distracted by my "IBS"-like symptoms, I am hoping I can keep various other body systems from further decline... mine, and his as well. I have to suppose that if "rare/less" is making a difference, that means that "some" is having an effect in him, probably in ways we're not even seeing.
Tex, I thought those components of rye/barley were themselves 'glutens' - not the same as the gliadin gluten in wheat, but more similar than the zeanin/oryzin glutens. Kind of a fine point, but maybe it will help Zizzle in this quest, somehow.
Love,
Sara
You're right of course. The problem lies in the way the nomenchature for the prolamin proteins is used by various sources of information. Technically, any prolamin protein in any grain is a form of gluten, so there is corn gluten, (zein), rice gluten, (orzenin), rye gluten, (secalin), etc. The problem is that all of the grains were given unique names for their particular type of "gluten", but wheat contains two prominent types of prolamin proteins, gliadins plus glutenins, (which give it unique baking characteristics), so wheat gluten is frequently referred to as simply gluten, (rather than as gliadins and glutenins), resulting in a very confusing situation. Yes, hordein and secalin are types of gluten, separate and distinct from the gliadins and glutenins found in wheat.Sara wrote:Tex, I thought those components of rye/barley were themselves 'glutens' - not the same as the gliadin gluten in wheat, but more similar than the zeanin/oryzin glutens. Kind of a fine point, but maybe it will help Zizzle in this quest, somehow.
I admit that I usually show the same shortcoming with failure to distinguish between the differences when I'm writing. Like most people, I refer to wheat gluten, (assuming that most readers will recognize that I'm referring to the combination of gliadins and glutenins), rather than referring to the specific prolamins themselves, and by doing so, I infer that the term "gluten" refers to a specific set of prolamins, found only in wheat, (when in fact, gluten is a generic term that applies to all prolamin proteins).
I realize that's a bit ambiguous, so I'll try to do better in the future, but we all realize how difficult is can be to teach an old human new tricks, (old dogs seem to do much better at learning new tricks. 
).Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I'll admit, my underlying reason for having this discussion is my attempt to convince my hubby to take on a gluten-lite or wheat-free diet, for weight loss, allergies, fatigue, and familiar autoimmune tendencies (not to mention my desire to have less bread, pasta and cookies in the house!). He's already stopped buying pretzels and other forms of non-gratifying gluten overload foods. I think he's starting to see the virtues of the diet, but it's too extreme for him. And he likes his beer...
One of there days...
One of there days...
I wonder what it tells us, that these grain proteins are related but different - as you know, I'm heading down a largely paleo path, not because the word 'gluten' is particularly alarming (confusing though it may be!)... just because it seems to be working. (And of course, not eating grains reduces the craving for grains, quite reliably!)
I wonder, are the prolamin proteins in other grains *less good* at some of the other talents of wheat, such as producing those addictive/opioid receptor reactions, or *no good at all* at doing so? Are their lectins "less able" or "unable" to unlock the tight-cell junctions, as pathogens can?
I'm not sure that's the right question, and I would guess the answer is different for us PPers, vs. those with GS genes who have not yet had a health crisis triggered. (However, since I'm not sure I've got hold of the right question, it is premature to be guessing at answers.)
I am, obviously, pretty sure that eating grains as a significant component of diet is a variably risky business. For me, for sure. For Z's symptomatic friends, for my husband, for all our relatives who have yet to be lucky enough to crash into a diagnosis... I wish I knew.
Z, have the GF beer options disappointed your husband? Are they readily available (and not triple the price?). My husband is away overnight, and was telling me he plans to stay GF for these 2 days. I pointed out that he may have trouble finding GF beer in the boonies where he's boating - and he *will* be having a beer when he gets off the water, no doubt! I have been trying to decide whether setting him up with GF beer-brewing gear is generous or - you know the other thing.
I do think, in a bizarre way, that we are lucky to know that gluten is our enemy. Those sure don't feel like lucky symptoms, but for people who have 'anxiety' or headaches or itchy scalp or fatigue or any number of a hundred more nebulous complaints, it's even harder to believe that diet is the main factor. It's hard enough for some people with digestive complaints, but at least that makes sense (to anyone but a GI doc).
Anyway, I can sure see why "no grains" would be a much harder sell than "no gluten!" I think the effort to be wheat-free isn't that different from the GF effort... except, as you point out, for beer. Keep us posted - how's your MIL doing? That must give him GF-food for thought... (Have you tested your son, or are you still pondering?)
I wonder, are the prolamin proteins in other grains *less good* at some of the other talents of wheat, such as producing those addictive/opioid receptor reactions, or *no good at all* at doing so? Are their lectins "less able" or "unable" to unlock the tight-cell junctions, as pathogens can?
I'm not sure that's the right question, and I would guess the answer is different for us PPers, vs. those with GS genes who have not yet had a health crisis triggered. (However, since I'm not sure I've got hold of the right question, it is premature to be guessing at answers.)
I am, obviously, pretty sure that eating grains as a significant component of diet is a variably risky business. For me, for sure. For Z's symptomatic friends, for my husband, for all our relatives who have yet to be lucky enough to crash into a diagnosis... I wish I knew.
Z, have the GF beer options disappointed your husband? Are they readily available (and not triple the price?). My husband is away overnight, and was telling me he plans to stay GF for these 2 days. I pointed out that he may have trouble finding GF beer in the boonies where he's boating - and he *will* be having a beer when he gets off the water, no doubt! I have been trying to decide whether setting him up with GF beer-brewing gear is generous or - you know the other thing.
I do think, in a bizarre way, that we are lucky to know that gluten is our enemy. Those sure don't feel like lucky symptoms, but for people who have 'anxiety' or headaches or itchy scalp or fatigue or any number of a hundred more nebulous complaints, it's even harder to believe that diet is the main factor. It's hard enough for some people with digestive complaints, but at least that makes sense (to anyone but a GI doc).
Anyway, I can sure see why "no grains" would be a much harder sell than "no gluten!" I think the effort to be wheat-free isn't that different from the GF effort... except, as you point out, for beer. Keep us posted - how's your MIL doing? That must give him GF-food for thought... (Have you tested your son, or are you still pondering?)
I haven't tested my son yet, but I will before the year ends. My MIL is doing great, but is not super careful with cross-contamination. She has more time to bake her own breads, etc. I'm proud of her! She also has a classic case of mastocytosis. She even had tests proving she had high mast cell counts, but no doc ever told her to do anything about it. They just give her lots of antihistamines and steroids when her chronic urticaria and angioedema act up. She told me she has vasculitis too and no follow-up!!
My husband has tried all the GF beers, Redbridge, Bards, Duarte's. They are all accessible around here, and he hates them all. I frankly don't notice much of a difference, but I'm not "into" beer. The next one to try is DogfishHead, which happens to be our local watering hole restaurant too. The GF beer should be available there soon, and I hear it's good.
My husband has tried all the GF beers, Redbridge, Bards, Duarte's. They are all accessible around here, and he hates them all. I frankly don't notice much of a difference, but I'm not "into" beer. The next one to try is DogfishHead, which happens to be our local watering hole restaurant too. The GF beer should be available there soon, and I hear it's good.
Yikes, your MIL has had all the fun of clueless doctors without the 'benefit' of hanging out here with us PP folks. Good for her - I hope she's able to dump some of her symptoms and medications (and less worthy MDs) in time.
I'm sorry the GF beers don't do it for your husband. I'm sure I'd feel the same way, if I were a hard-core baker and now trying to make GF baked goods. I think my simmering issues had put me off of most baked goods for a long time, so now I just don't do 'em at all. Actually, I might feel that way about beer, which I used to love, but it's been not-right for me for years. (Why why why didn't I follow up on that instinct??)
I hope the DogfishHead offering is great - how great if the local guys win him over. I know you'll keep us posted when you set up your son's testing - meantime I hope he stays well and is thriving.
I'm sorry the GF beers don't do it for your husband. I'm sure I'd feel the same way, if I were a hard-core baker and now trying to make GF baked goods. I think my simmering issues had put me off of most baked goods for a long time, so now I just don't do 'em at all. Actually, I might feel that way about beer, which I used to love, but it's been not-right for me for years. (Why why why didn't I follow up on that instinct??)
I hope the DogfishHead offering is great - how great if the local guys win him over. I know you'll keep us posted when you set up your son's testing - meantime I hope he stays well and is thriving.
Zizzle,
Remember that for someone who is not symptomatic to gluten, a state of absolute abstinence is not essential, in order to see benefits from the diet. In the absence of antibodies, a low-gluten diet should have merits that would not be available to someone who produces antibodies to gluten. It least I think that should be correct.
Tex
Remember that for someone who is not symptomatic to gluten, a state of absolute abstinence is not essential, in order to see benefits from the diet. In the absence of antibodies, a low-gluten diet should have merits that would not be available to someone who produces antibodies to gluten. It least I think that should be correct.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
I don't know what I think about this. A lot of people are probably like I was, walking around all symptomatic and not knowing it. I believe (I think I believe!) that during the years of my unexplained remission from MC symptoms, before I knew about the gluten/diet connection, I was accumulating additional damage to multiple body symptoms. I didn't have D, or migraines, or skin issues... but I had aches and pains, a probable flavor of depression, and what I now know to be peripheral neuropathy, which I assume would have gotten worse. This might imply that those who are not symptomatic in a grand way are not necessarily safe - I wasn't. Maybe I've even had my first white-matter lesions; maybe there's been thyroid compromise... I'm not looking for trouble, but there are so many little things that can begin to go wrong while we consider ourselves asymptomatic, or maybe we consider our symptoms to be minor, or blame them on stress, our busy lifestyle, middle age, specific life circumstances - mothers with young children are so often focused on the well-being of others, for example; caretakers of elderly/ill loved ones, likewise... so we think, I'll have to think about this once I get everyone back to school, or my mother's living situation stabilized, or my job situation ironed out...
I was eating "less" gluten, for some time before MC resurfaced - skipping the bread at restaurants, favoring wine over beer - I never ate a sandwich unless it was open-faced, and preferred other lunch formats (this drove my husband wild - who doesn't like sandwiches?).
Of course, we don't know at what point I would have had diagnosable anti-gliadin antibodies - whether I would ever have had them in blood, or at what point they were clearly elevated in stool, for me. But, then, most people who think they are asymptomatic don't know, either.
I realize it is a pretty wacky idea that everyone should do a cheek swab, and then avoid gluten if the genetics indicate there's an outside chance it might ever cause problems. (But how I wish!)
My friend with asymptomatic Hashimoto's, confirmed by biopsy (why a biopsy in the absence of symptoms, I don't know - odd results on blood test??), also has transient dizziness. He believes this is 'atypical migraine without headache' - which could easily be autoimmune; I fervently hope it is not the beginnings of gluten ataxia. That man is not symptomatic to gluten, but he's sure got something going on that *might* be symptoms. I can't imagine that *none* would not be better for him than *a little* - and of course, I also cannot imagine why he'd listen to my idea that he should even cut down, much less cut out, eating whatever the heck he wants to. (I did tell him, "you get one more autoimmune thing, and then we *really* have the gluten chat." And when we were out to eat, and he told the waitress after my 'special' order, "I can eat anything" - I said, "as far as you now know," and he agreed... but that's a long way from persuasion.)
I consider my husband's assertion that he feels better without gluten, and that he notices when he does have some... and I wonder, is it really benign, that which he notices, when he has a non-Sara-friendly meal? I'm not sure how we'd know, unless and until the symptoms hit the fan (pardon the expression!).
Zizzle, if I'm reading correctly - you believe that your husband *is* symptomatic; nothing like the awful symptoms that usually bring us MCers together, but not A-OK either. I know you're also mindful of his family history (you must be the world's best DIL). I am sure that *less* is better than ignoring the whole issue, and if that's a gateway to going GF, I am all for it.
Tex - I hope that you are right, that until it's a problem - it is not a problem. I just don't know how we can tell when it tips over. I do not believe that people with our shared genetics (all of us, but let's say particularly the 3 of us 0201ers in this chat) need to avoid gluten from birth. (Would have worked!, but probably wasn't necessary.) But I don't know how to figure out what level of simmering symptoms might be helped by 'less' vs. 'no' gluten. Sorry this got so long - I am ruminating
Love,
Sara
I don't know what I think about this. A lot of people are probably like I was, walking around all symptomatic and not knowing it. I believe (I think I believe!) that during the years of my unexplained remission from MC symptoms, before I knew about the gluten/diet connection, I was accumulating additional damage to multiple body symptoms. I didn't have D, or migraines, or skin issues... but I had aches and pains, a probable flavor of depression, and what I now know to be peripheral neuropathy, which I assume would have gotten worse. This might imply that those who are not symptomatic in a grand way are not necessarily safe - I wasn't. Maybe I've even had my first white-matter lesions; maybe there's been thyroid compromise... I'm not looking for trouble, but there are so many little things that can begin to go wrong while we consider ourselves asymptomatic, or maybe we consider our symptoms to be minor, or blame them on stress, our busy lifestyle, middle age, specific life circumstances - mothers with young children are so often focused on the well-being of others, for example; caretakers of elderly/ill loved ones, likewise... so we think, I'll have to think about this once I get everyone back to school, or my mother's living situation stabilized, or my job situation ironed out...
I was eating "less" gluten, for some time before MC resurfaced - skipping the bread at restaurants, favoring wine over beer - I never ate a sandwich unless it was open-faced, and preferred other lunch formats (this drove my husband wild - who doesn't like sandwiches?).
Of course, we don't know at what point I would have had diagnosable anti-gliadin antibodies - whether I would ever have had them in blood, or at what point they were clearly elevated in stool, for me. But, then, most people who think they are asymptomatic don't know, either.
I realize it is a pretty wacky idea that everyone should do a cheek swab, and then avoid gluten if the genetics indicate there's an outside chance it might ever cause problems. (But how I wish!)
My friend with asymptomatic Hashimoto's, confirmed by biopsy (why a biopsy in the absence of symptoms, I don't know - odd results on blood test??), also has transient dizziness. He believes this is 'atypical migraine without headache' - which could easily be autoimmune; I fervently hope it is not the beginnings of gluten ataxia. That man is not symptomatic to gluten, but he's sure got something going on that *might* be symptoms. I can't imagine that *none* would not be better for him than *a little* - and of course, I also cannot imagine why he'd listen to my idea that he should even cut down, much less cut out, eating whatever the heck he wants to. (I did tell him, "you get one more autoimmune thing, and then we *really* have the gluten chat." And when we were out to eat, and he told the waitress after my 'special' order, "I can eat anything" - I said, "as far as you now know," and he agreed... but that's a long way from persuasion.)
I consider my husband's assertion that he feels better without gluten, and that he notices when he does have some... and I wonder, is it really benign, that which he notices, when he has a non-Sara-friendly meal? I'm not sure how we'd know, unless and until the symptoms hit the fan (pardon the expression!).
Zizzle, if I'm reading correctly - you believe that your husband *is* symptomatic; nothing like the awful symptoms that usually bring us MCers together, but not A-OK either. I know you're also mindful of his family history (you must be the world's best DIL). I am sure that *less* is better than ignoring the whole issue, and if that's a gateway to going GF, I am all for it.
Tex - I hope that you are right, that until it's a problem - it is not a problem. I just don't know how we can tell when it tips over. I do not believe that people with our shared genetics (all of us, but let's say particularly the 3 of us 0201ers in this chat) need to avoid gluten from birth. (Would have worked!, but probably wasn't necessary.) But I don't know how to figure out what level of simmering symptoms might be helped by 'less' vs. 'no' gluten. Sorry this got so long - I am ruminating
Love,
Sara
Sara,
Sorry I left the wrong impression with my posts - I was a little short on time, so I cut some corners, and left out some details. To begin with, back where I was talking about the various prolamin proteins, I neglected to point out that all these well-known prolamins are not the only ones present - they're simply the ones considered to be the most significant, (and therefore, the ones that have been studied). Corn has other prolamins besides zein, barley has other prolamins besides hordein, and wheat has other prolamins in addition to the gliadins and glutenins that have been cataloged, etc. Many of the peptides which have not yet been studied, probably cause some degree of at least minor allergenic effects, but so far at least, no one has bothered to wring them out, because their effects are presumed to be much less significant than the ones already studied. Tests are not even available for them, on a production basis, so there is no way of even knowing if any of us produce antibodies to them.
For most people, their reaction to the alpha gliadin peptide is so strong that by comparison, most of the other peptides have a negligible effect. That doesn't mean that those other peptides are not causing damage, it simply means that they are so much less significant, that they sort of fall off the radar, by comparison. So in the real world, while we may react to dozens or even hundreds of peptides, only a few are typically significant enough for us to notice their effects. This is the effect that Dr. Fasano is/was hoping to capitalize on, with his "anti-zonulin" pills, (I say "was", because the project appears to currently be dead in the water). (Of course, as we know, once we eliminate the primary allergenic treat, the next one in line will grab the attention of our immune system). It's possible that it's this effect that convinces many people that they are only sensitive to wheat. IOW, the jury may still be out. (And, I wonder if this effect might be the obstacle that Fasano's project has encountered.)
Remember that one doesn't develop food sensitivities overnight. True, the genes that predispose to food sensitivities may be triggered overnight, but unlike an innate response, an adaptive immune response takes time to develop, and it becomes increasingly severe, as time passes, and the level of antibodies in circulation continues to increase. Early on, it might be possible that many individuals only react to the alpha gliadin peptide in wheat, for example, and additional reactions to other peptides may not develop until the initial reaction begins to mature. There is a heck of a lot about immune system function that is unknown.
So I'm not saying that those individuals who claim to be sensitive only to wheat are "home free", as far as damage from other peptides is concerned - I'm just saying that they may not be able to detect those other reactions at the stage of an adaptive immune system response they happen to be in. It may be a matter of out-of-sight, out-of-mind. Most of this is uncharted waters.
Love,
Tex
Sorry I left the wrong impression with my posts - I was a little short on time, so I cut some corners, and left out some details. To begin with, back where I was talking about the various prolamin proteins, I neglected to point out that all these well-known prolamins are not the only ones present - they're simply the ones considered to be the most significant, (and therefore, the ones that have been studied). Corn has other prolamins besides zein, barley has other prolamins besides hordein, and wheat has other prolamins in addition to the gliadins and glutenins that have been cataloged, etc. Many of the peptides which have not yet been studied, probably cause some degree of at least minor allergenic effects, but so far at least, no one has bothered to wring them out, because their effects are presumed to be much less significant than the ones already studied. Tests are not even available for them, on a production basis, so there is no way of even knowing if any of us produce antibodies to them.
For most people, their reaction to the alpha gliadin peptide is so strong that by comparison, most of the other peptides have a negligible effect. That doesn't mean that those other peptides are not causing damage, it simply means that they are so much less significant, that they sort of fall off the radar, by comparison. So in the real world, while we may react to dozens or even hundreds of peptides, only a few are typically significant enough for us to notice their effects. This is the effect that Dr. Fasano is/was hoping to capitalize on, with his "anti-zonulin" pills, (I say "was", because the project appears to currently be dead in the water). (Of course, as we know, once we eliminate the primary allergenic treat, the next one in line will grab the attention of our immune system). It's possible that it's this effect that convinces many people that they are only sensitive to wheat. IOW, the jury may still be out.
(And, I wonder if this effect might be the obstacle that Fasano's project has encountered.)Remember that one doesn't develop food sensitivities overnight. True, the genes that predispose to food sensitivities may be triggered overnight, but unlike an innate response, an adaptive immune response takes time to develop, and it becomes increasingly severe, as time passes, and the level of antibodies in circulation continues to increase. Early on, it might be possible that many individuals only react to the alpha gliadin peptide in wheat, for example, and additional reactions to other peptides may not develop until the initial reaction begins to mature.
There is a heck of a lot about immune system function that is unknown.So I'm not saying that those individuals who claim to be sensitive only to wheat are "home free", as far as damage from other peptides is concerned - I'm just saying that they may not be able to detect those other reactions at the stage of an adaptive immune system response they happen to be in. It may be a matter of out-of-sight, out-of-mind. Most of this is uncharted waters.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.